The day started off well, we left home at 7.30am to get to Manchester on time for the appointment. It’s quite a drive and of course there’s always traffic at that time in the morning and we didn’t want to risk being late. I hadn’t slept much anyway (too excited I think!) so was up and about quite quickly for me; it was typical in a way that I felt pretty good when I saw my Rheumatologist, they never seem to see me at my worst but hey ho.

I was still a bit concerned about the missed calls last night but figured they were probably just checking that I was still going. Everything was on track when we got to the ward thankfully, we just had a bit of a wait before I was shown to my room and then the nurse came and talked me through everything – I’m the first person to be prescribed Abatacept at my hospital, so it’s new for them too.

After the canula was fitted and I’d had some bloodwork done, my rheumatologist came to see how I was; I think my mum had rang during the week to say I’d been quite poorly, so he was probably surprised to see me looking as well as I did, although I’m sure he understands the ‘rollercoaster’ nature of this disease as much as we do. We had a good chat about things and he agreed that I could increase my Prednisolone to 40mg for the wedding and then reduce them quite quickly afterwards. This is a relief, since I’m still worried about how I will manage to get through the next three days, it just seems physically impossible.

We had quite a wait after that as the Abatacept has to be mixed especially, alongside the chemo drugs, to make sure it is sterile and this only happens in the afternoon. It gave us chance to pick up my Methotrexate prescription and then a cooked lunch was served – you’re probably cringing at the thought of hospital food, but as far as it goes it’s actually pretty good so no complaints from me.

The Orencia finally arrived at about 2pm, just one tiny little packet. The nurse sat with us as it went through, since we weren’t really sure how things would go. I’d been told it was usually well tolerated, so I wasn’t expecting there to be any terrible side effects, but it’s always better to play it safe. Anyway, I felt fine but it did take a little bit longer to go through than expected because the line kept claiming to be blocked, but still only about 40 minutes. The difficulty could have been down to my weedy little veins, but the line seemed to be positioned okay so who knows… I think we’ll try a different vein next time though.

After that I needed to be monitored for an hour or so, just to make sure there were no adverse reactions. It was just after 3pm at this point so my friend agreed to a slight detour and got off her train at Manchester instead, making her way to the hospital to meet us. The only ‘effects’ I had from the infusion seemed to be a five minute spell of feeling a bit tipsy, almost as if I’d drunk a glass of red wine a bit too quickly – that warm, tingly feeling you get – but it went as fast as it came on and wasn’t exactly unpleasant.

Then I was free to go, with my next appointment booked for Thursday 14th July, which is in two weeks time. I may be imagining things – perhaps it is the adrenaline kicking in now that the weekend’s events have started – but I feel like it is helping already, as if the strength has returned to my arms rather than the weak, floppy feeling I have become accustomed to. I guess only time will tell, but I am feeling hopeful and positive as I write this. I’m sure there will be many toasts this weekend but I’d like to offer my own:

My appointment to start Orencia is at half 9 in the morning, which means an early start. I’m hoping that it will all be over by the afternoon so that I can make a start on packing for the wedding at the weekend, since we leave on Friday morning. I also need to pick my friend up from the station at about half 4; she’s travelling from Cornwall, which would be too much before the evening’s activities, so I invited her to stay with us for a night. It’s going to be a busy busy day!

Edit: Just discovered two missed calls on my mobile from the hospital. I hope nothing has changed with the plans for tomorrow, it would be just my luck for them to cancel at the last moment, although that would be pretty mean.

Is it sad that I am actually feeling excited about this? I just hope this is the one that is going to turn things around.

Further to the article I posted on Friday is this, more indepth article on NICE’s decision not to approve Orencia / Abatacept as a second-line treatment for patients with Rheumatoid Arthritis.

Fortunately, everything still seems to be going ahead for me starting this drug on Thursday, possibly because of my Still’s Disease diagnosis or the number of other drugs we’ve tried to control it, or maybe it’s just because this is still a draft guideline. But the implications of this decision still bother me; are they really suggesting that patients who are taking Orencia and managing the disease successfully should stop because it isn’t cost effective? Is it not more cost effective for someone to be stable on a drug, rather than to keep finding the funding to try different things or just to need regular hospital admissions/rheumatology appointments/surgeries etc?

Worryingly, the chief executive of NRAS believes that a group of patients will be condemned ‘…to a life of pain and misery, with worsening disease which offers an ever-decreasing quality of life’, and she goes on to say that for these patients, ‘long-term, high-dose steroids may become the only option’. This, as we recently discussed, would only add to the patient’s medical problems in the future and, again, would not seem to be cost-effective.

Lets hope they rethink the decision or that they are hoping that the more cost-effective injectable form of Orencia gets approval in the near future,

It seems Still’s Disease is so rare that articles about it are few and far between, but I hope you won’t mind the occasional RA one. I couldn’t help but post this story, which I found truly inspirational, especially on a day when I was feeling so low (even if it does turn into an advertisement for a certain drug).

In short, Jeffrey Gottfurcht, who suffers from Rheumatoid Arthritis, has managed to climb to the the peak of Mount Everest; he is the first person with RA to do so – pretty amazing. Commenting on his reasons for undertaking such a task he says:

“In coping with rheumatoid arthritis, an incurable disease, I have been moved to reach out to others who are similarly affected, especially children, who have to put everything on hold, including their dreams. My goal of climbing Mount Everest was to inspire those with rheumatoid arthritis, whether adults or children, to reach higher and achieve their dreams.”

–

I think this is so eloquently put and so so true. One of the hardest things when dealing with illesses like Still’s Disease and Rheumatoid Arthritis is the slowing down of life, putting everything on hold when a flare takes over and feeling left behind as everyone else gets on with their lives. When dealing with pain and fatigue on a daily basis, it seems impossible that we could ever achieve something like this but it is important to keep sight of our dreams, even if they’re a long time coming true; because otherwise, what is there to look forward to and aim for?

I was only talking about this the other day – can the foods we eat affect disease activity / pain levels? This article claims that up to a point it can and, although it is quite vague, there may be one or two pointers you can pick up. Could help us understand more about the rollercoaster nature of this disease.

A week today my very good friend will be getting married and I will hopefully be her bridesmaid.

I am, however, increasingly concerned as to how I am going to manage this three day event, despite my efforts to think positive and rest and blah blah that people keep advising me.

I don’t want to turn the focus of this blog to my own symptoms, but they are sure hard to ignore right now. Today has been one long power nap and I feel that after benefiting from the steroid injections for about ten days, things are starting to fall apart at the seams again – the left knee is swollen, fingers are stiff and the left elbow locked at 120 degrees and things just generally hurt. Plus I have this pain in my chest again, although it is different from last time when I was admitted with Pericarditis. I have a feeling that the awkward position of my elbow is putting extra strain on the muscles in my shoulder/chest and causing the pain, but yowser it hurts and is distracting me from the things I should be doing in preparation for next week.

I mean, I have my outfits sorted but my hair and nails could do with some attention and I need to go to the shops for cards etc, decide on a wedding gift, sort the dogsitter out with some food, book transport for myself and the photographer and ohmygodaboutamillionotherthings… but I am just about managing to sit up and type this. I am usually so organised too, Still’s Disease robs me of that ability.

I really hope that on top of everything else, I don’t go and forget something.

Basically it says that approval has been taken away for the use of Abatacept / Orencia in the UK as a treatment for RA and even goes on to say that:

‘patients currently receiving abatacept for treating rheumatoid arthritis should be allowed to continue therapy until they and their clinicians consider it appropriate to stop.’

I was supposed to be starting this next Thursday. I have been waiting since January for funding approval etc and only got it this month, now it could all have been for nothing and I might have to go through the same again to get funding for another drug…

Maybe I’m jumping to conclusions and should wait to see what the hospital says, if anything – there could be a loop hole since my diagnosis is Still’s Disease, not RA.

My Still’s Life

My name is Laura and I was diagnosed with Still's Disease at the age of 19, with previous diagnoses of Dermatomyositis at 14 and Post-Viral Reactive Arthritis at the age of 3. Life is a bit of a rollercoaster to say the least, but I'm happy to say that I have had my fair share of highs with the lows. I have currently been off work for over 18 months due to a severe flareup and was getting bored, so I thought that I would try and put my mind to something constructive.

I have tried numerous drugs to treat my Still's over the years, including:

Unfortunately, having one autoimmune disease can lead to other health problems and I have also developed Hidradenitis Suppurativa, Gastritis, Anaemia of Chronic Disease, MVP, PCOS and Migraine, which I post about from time to time.

Happy reading :)

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Food For Thought

Toughness is in the soul and spirit, not in muscles.

~Alex Karras

The block of granite which was an obstacle in the pathway of the weak, became a stepping-stone in the pathway of the strong

~ Thomas Carlyle

Strength does not come from physical capacity. It comes from an indomitable will.

~ Mahatma Gandhi

You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'